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A man interacts with a video kiosk in the All of Us Journey, a traveling exhibit that is visiting communities across the country to raise awareness about the program. (Photo by NIH)

Building Diversity into Medical Research

July 23, 2019

Some drugs prescribed to treat conditions and diseases as common as asthma and high blood pressure can save a life — or be no more effective than a placebo. And the difference may depend on a patient’s race or ethnicity, or any of several other factors.

Historically, clinical research to study disease and test the effectiveness of medical treatments that support the guidelines doctors use for all patients is based largely on recruitment and participation of urban white males, ages 18 to 64 years.

That means all patients, no matter their differences, generally are prescribed drugs and treatments proven safe and effective for one single set of study subjects. But those treatments don’t necessarily work equally for everyone.

In response, in May 2018, the National Institutes of Health (NIH) kicked off a national research program called All of Us, part of the NIH’s broader efforts to promote what’s known as precision medicine — treatments that are personalized for individual patients based on genetics, lifestyle and environment.

The objective of the All of Us Research Program is to recruit at least 1 million participants to build the most diverse biomedical data resource in history to help advance precision medicine. The program is funded through the 21st Century Cures Act, and is already the largest medical database ever in the U.S.

More than 164,000 people have completed the initial surveys and visited clinics to provide physical measurements and blood and urine samples. Participants may also agree, if they wish, to contribute ongoing data from their health care providers’ electronic health records systems, or to connect a wearable device.

Eighty percent of All of Us participants so far are from communities who historically have been underrepresented in biomedical research. More than half are from racial and ethnic minority groups.

An interactive data browser allows participants, researchers and the public to see some aggregate data collected so far. Later this year, registered researchers may request access to deeper data and research tools for studies that may lead to greater insights and more customized ways to prevent and treat disease.

To protect the privacy of the participants, all personally identifiable information has been removed from the data shared with the public and researchers.

One important feature of All of Us is a panel of 32 "participant partners" who help support program design, implementation, and governance. They provide input on research priorities, participant retention, privacy and security, and the meaningful return of information to participants.

Blue Cross and Blue Shield of Illinois (BCBSIL) is partnering with the NIH to promote awareness and participation in All of Us. BCBSIL is not involved in collecting or sharing the information. With social media posts and other marketing channels, it's directing potential participants to enroll through the program’s online portal.

Inequitable careFor decades, researchers assumed what they learned from clinical trials with white men would apply everyone, regardless of gender, race or ethnicity.

Since 1993, fewer than 5% of respiratory studies funded by the NIH have included reports on racial or ethnic minorities, according to research published in the journal PLoS Medicine. Fewer than 2% of studies funded by the National Cancer Institute have met federally mandated diversity goals in place for more than 20 years.

But some people's bodies process drugs differently because of genetic differences.

Clopidogrel, a blood thinner better known as Plavix, doesn't work for 75% of Pacific Islanders who take it because their bodies don't produce the enzyme needed to activate the drug. The most common medications prescribed to treat asthma often don’t work well for Puerto Ricans and African Americans, who experience the highest rates and greatest severity of the disease.

The reasons certain groups of people have different health outcomes go beyond genetics. Factors like cultural lifestyles, diets and economic opportunities play also play a role. Experts say they need more diverse research to understand and address these disparities.

“The inclusion of minorities affects more than minority health and health disparities,” Dr. Eliseo J. Pérez-Stable, director of the NIH’s Institute on Minority Health and Health Disparities, explains on the agency's website. “It is also a question of social justice — and of good science.”

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